Deirdre was diagnosed with chronic lymphocytic leukaemia eighteen years ago after developing swollen lymph glands in her neck. She was on watch and wait for three years and has had two courses of oral chemotherapy since. She is currently very well.
Deirdre developed lumps in her neck and as they didn’t worry her she did nothing about them for about 5 years. Then she pointed them out to a doctor at a well woman clinic. The doctor took a blood sample and a few days later telephoned to ask her to come to the surgery, which she did. The doctor told her that she had chronic lymphocytic leukaemia (CLL) and sent her to the hospital for a bone marrow biopsy to confirm this. As the leukaemia was not affecting her at the time, and there never seemed to be a good time to tell the family, Deirdre only told one friend about the diagnosis. But after about five months she plucked up courage to tell her husband and teenage children.
Some time before she had noticed the swollen lymph glands in her neck Deirdre had had swollen hands. The GP had suspected a viral infection because her white blood cell count had been high, and the swelling went away without treatment. After the leukaemia diagnosis her consultant told Deirdre that she had probably had her leukaemia for several years prior to diagnosis, going back to the time of her swollen hands, so Deirdre assumes that this was part of the problem but has not had this confirmed.
After diagnosis, Deirdre was put on watch and wait involving frequent consultations at the hospital. After about three years she began to feel very tired and lethargic but these feelings gradually disappeared. Another such dip occurred about a year later and thereafter dips occurred more frequently. During these episodes she did all the things she had to do but didn’t feel able to do any more than that, so some jobs remained undone.
About 5 years after diagnosis it was decided that Deirdre was ready for treatment. She was given chlorambucil chemotherapy tablets (one a day for several days each month for 4 months). This gave her no side effects and made her feel better for a while. Three years ago she had treatment again, this time 4 months of fludarabine and cyclophosphamide (3 days in each month for 4 months), which made her feel quite sick but put her into remission.
Although her white blood cell counts are increasing again Deirdre feels very well at present. Over the years she has been admitted to hospital 4 times with infections and once had a bout of food poisoning that left her gut very sensitive for a while afterwards. Deirdre regrets that there is no local support group she could join as she would like to support other people with CLL.